Hi, can you develop hughes syndrome as you get older? I have had to healthy pregnancies but on my third I had a miscarriage at 16 weeks

I have had 2 healthy pregnancies resulting in two live babies but on my third I had a missed miscarriage at 16 weeks. I have read a lot about hughes syndrome but my doctor won't test for it as I have only had one miscarriage, even though it's a second trimester loss. I'm scared to try for another pregnancy in case it results in the same way. Please can someone advise if I could have developed hughes syndrome since having my children? Thanks

7 Replies

  • Yes, definitely could be due to Hughes or could be something else. Since this was a later loss, it would be appropriate to test you for Hughes. Do you have a personal or family history of migraine, autoimmune disease, blood clot or stroke. If so, that would provide even more reason for you to get tested.

  • First an foremost Im really sorry for your loss. The first thing I would do is have a look on the HSF website and see if you have any of the symptoms of Hughes. If anything rings any bells then that would be a start because you can go back to your GP and point them out and ask if she can run the antibody tests that you will also find on the website.

    If there is nothing there and you really want to be sure then you could go privately to get your blood tests done. Sometimes through those tests don't always come back positive but at least it would give you some idea.

    You also have to face the possibility that it is not APS that has caused your tragic loss. These things can be difficult to actually get to the bottom of. Did they not do any tests at all at the time?

    Please do not let it put you off having another though. You must give yourself time to grieve but Im sure when the time is right for you to try again the Doctors will take an extra special eye on you. x

  • It would seem APS can start later on. I had my first child without a problem, then started getting migraines which were worstened by some personal stress, then I had a stroke, another baby (I lost a twin to him), a miscarriage, another baby (waters broke at 28 weeks, leaving him very ill indeed), and another baby who was premature. APS only diagnosed last year but the picture is there that the problem has been with me a long while, seemingly exacerbated by extreme stress.

    Sorry for your loss. I don't know where you are, but my obstetrician deals with pregnancy loss, and has had success treating women with plaquenil. There is a way forward.

  • Thanks for your replies, I will push my doctor to test me I think

  • I was diagnosed at age 45 after 2 healthy births (though the 2nd involved a placenta previa -- which probably had nothing to do with APS.)

  • Hi, my first loss was at 19 weeks and the hospital automatically ran tests before i went home as a second trimester is unusual and should ALWAYS be investigated. I would bypass your doctor and see if you can be referred to a consultant of pregnancies to discuss a care management plan,and explain you dont want to try again unless you do something different,they will do this for you-i did it. I was given tests and 5mg folic acid before even trying again,and it gave me the confidence to do so-im so sorry for your loss x

  • I believe so. I had 3 pregnancies. 3 lovely kids. The third pregnancy was hard and had lots of circulation problems and a terrible birth. When my third child was very small I started with my migraines and dizziness. I had an 'episode' and was left unable to walk properly, slurred speech and balance problems. I was diagnosed with possible ms after ct scans etc. I recovered after about 4 months (looking back that may have been my first stroke @ 27 yrs old) I had an IUD installed and didn't have another pregnancy for 8 yrs. That was uneventful and had a healthy baby. 2 years later found I was pregnant again. I was already on Coumadin at the time as I had been diagnosed with APS after extensive blood work and a massive DVT in my jugular vein. I lost the baby at 12 weeks and had to have d and c. I did switch to lovenox while I was pregnant and blood tests every other day. Since then I have had a stroke and heart surgery to repair PFO and atrial aneurysm. I have lots of dizzy spells, memory issues and numbness that comes and goes. TIAs and bowel issues. Also the livedo rash and fatigue. Thyroid was removed some years ago and tsh and t4 are within range. Super dry skin in legs and veins everywhere. It's all fun! :/

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